Peripheral neuropathy : Hello everyone,Last time I... - LUPUS UK

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Peripheral neuropathy

ijeasike profile image
14 Replies

Hello everyone,Last time I spoke about my neuropathic pain. I finally saw a neurophysiologist yesterday. He did some needle test and another with a tuning fork (that's what ur looked like). So just like the title says. He said I have peripheral neuropathy. He would recommend I increase my Gabapentin and he would schedule for so heat pad procedure to be done in my foot.

According to him my Belimimab infusion are keeping all my organs stable so that's helping with the neuropathy. He said I should call DVLA and inform them of this diagnosis. I guess I will just wait and see how the treatment goes. EOLHPC this is the update as promised.

Thanks everyone xxx

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ijeasike
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14 Replies
minka profile image
minka

Where is yours both legs

ijeasike profile image
ijeasike in reply tominka

Sorry I do not understand the question

EOLHPC profile image
EOLHPC

🤩many thanks ijeasike! Am so glad your neurophysiology tests have helped sort better treatment out. This is really really good news💞💞💞💞

My neurophysiology tests helped too, finding a specific type of peripheral neuropathy called: sural axonal peripheral neuropathy. I wonder if you’re like me: I find knowing these extra details helpful & interesting. Maybe, if you’re interested, some day your doctors will let you know what type you have too. But the most important thing is that we’re both benefitting from adjustments in our treatments which can hopefully reduce the pain & other problems our neuropathies are causing. 🍀🤞✌️

ijeasike profile image
ijeasike in reply toEOLHPC

Thank you

EOLHPC profile image
EOLHPC in reply toijeasike

you’re v welcome 💞…am now hoping you’ll keep us posted re the heat pad procedure: am very curious what this actually is! And I hope extra gabapentin helps

ijeasike profile image
ijeasike in reply toEOLHPC

Oh yes, I will definitely update you guys.

theone62 profile image
theone62

very lucky he found something, mine is idiopathic so I just have to deal with pain without really knowing what is causing it

ijeasike profile image
ijeasike in reply totheone62

Yes I understand that feeling.

Marge11 profile image
Marge11

Hi I’m fairly new on here, can I ask if they said what is causing your  peripheral neuropathy. I have been diagnosed with it and my feet and legs are getting worse while I am waiting for a diagnosis of some sort of immune system problem. I’ve just found out it’s not lupus but have been tested for Myosis and waiting for the results. Are you diabetic?? What did the DVLA say?? Sorry for all the questions.

ijeasike profile image
ijeasike in reply toMarge11

Don't worry it's OK to ask questions 🤗🤗My doctor said it may be the lupus or a side effects of somany treatments in the past. I am not diabetic but my family has a history of diabetes. I am waiting for the letter from my doctor about the appointment so I can send it to Dvla and they can write to the doctor fir more information. Dr said it won't stop me driving its just the legal stuff.

dg70 profile image
dg70

Interesting about informing the dvla. I may have to look into that myself, I never thought about it but I can see it could be an issue as the neuropathy progresses and safe driving.

ijeasike profile image
ijeasike in reply todg70

It terrified me but the Dr reassured me that he will sign me off as safe to drive.

Marge11 profile image
Marge11

Thank you and Good Luck with everything 🍀

dg70 profile image
dg70

Good to know.

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